Recently this absolutely beautiful photo was posted on facebook.I guess some might say I have two “rainbows” of my own, Greg (now 31) born after miscarriage and Sarah 21 born after our daughter Emma’s Stillbirth. In fact I suppose some parents might want to call all four of our living children rainbows as they were all born subsequent to a miscarriage. Personally I struggle to see how this is helpful and I have to say I also have concerns for the child who is called a “rainbow” for part, or all ,of their lives. There is no doubt that losing a baby throws you into a storm. In lots of ways the analogy of a pregnancy loss storm is a really good one. In the initial cyclone (Hurricane) you can struggle to do even simple daily activities like standing up, you can be hit by flying debris, you can wonder if you will survive…when the storm passes you can find your life needs to be completely rebuilt and even after many years you can often still see the scars. BUT Emma’s death completely transformed my life so to call her death a storm only tells a very small part of the story. I often wonder where I would be without all of the gifts she brought, and continues to bring, into my life. Sarah, as all our children have, has brought joy into our lives. But calling her a rainbow is not something I would be willing to label her with. I have always been aware of the research around subsequent children and some of the labels like “replacement” , “umbrella child”, “ghost in the nursery”. For me “rainbow” is a similar kind of label. It brings an image of relief that the storm is over and hope that such a storm will never happen again. Both at least at first glance are also really appropriate to a baby born after a loss. I felt tremendously relieved when Sarah was born and she also brought hope back into our lives. But the problem with any label is that it sticks , when do you stop using it? And most importantly what impact does it have on the child to be introduced as a “rainbow”. Sarah is our child, now a beautiful intelligent, young woman whose life can not and should not be defined merely by the circumstances of her birth.

Apple has announced a new home fetal monitor that “talks” to an apple watch, marketing it as the “best thing apple has done for women”!! I have mixed feelings about this and here’s why.I think that empowering the pregnant woman to understand that she is the one who is in charge and therefore the one who knows her unborn baby the best is an absolute no brainer and anything that helps this empowerment is a good thing BUT as a midwife I think that it is absolutely imperative that the pregnant woman and her care provider work in partnership to keep the baby safe. She needs to do her bit by keeping in touch with her maternal intuition, getting to know her baby’s movements and immediately reporting a change, listening to her body and immediately reporting any changes there too. On the other side of the coin is the maternity care provider (Midwife, doctor, obstetrician) they need to match what the mother is doing by carefully monitoring the pregnancy at all the prenatal (antenatal ) visits and listening… TRULY listening to the woman AND acting on her concerns. Problem is this kind of ideal partnership is rare, what typically happens is that the mother quite willingly surrenders herself to her care provider and virtually pays little or no attention to the pregnancy between visits. So if she buys one of these devices to get in touch with her baby then that is probably a good thing.Now whilst there is nothing wrong with listening in to the baby I think she has to be quite careful about what she is doing and why she is doing it. If she wants to get to know he baby better and thinks this is a good way of doing it she is probably right. BUT if she is using it to check on fetal wellbeing then that’s a whole different ballgame. Listening to the fetal heart only gives you one small aspect of what is happening …literally how many times the baby’s heart is beating in a minute. I have done some palliative care in my time and I can tell you that someone could be on the verge of dying but still have a heart beat and if I all you did was take their pulse it would be difficult to tell they were dying. What is needed is the whole clinical picture, what do they look like, what are they acting like, what else is happening…all these things are vital to tell you what is actually going on. So listening to the heart beat is really not enough on its own. Therefore, if she is listening in and hears a heart beat AND this stops her from listening to her intuition that something is wrong and seeking help from her care provider then that could have potentially catastrophic consequences for the unborn baby What about the home monitors that send a (NST /CTG) trace to a maternity care provider? There is little doubt that this kind of technology can save lives. The best example of this, that I know of, is Dr Jason Collins who provides a woman with a home fetal monitor and he can then view the heart trace remotely . He has done this for many years and has undoubtedly saved many babies lives as a result. BUT this kind of technology really needs to be taken seriously. So it does concern me that the woman can potentially purchase a fetal monitor without consultation with her care provider and use it to “monitor” her baby. This would be akin to a woman purchasing an ultrasound machine in order to regularly look at her baby. Without the medical knowledge to interpret what she is seeing this could be potentially quite dangerous. Likewise if she is looking at the print out from a fetal monitor without the knowledge of how to correctly interpret the read out then this could potentially provide her with false reassurance.So home fetal monitoring CAN be a totally brilliant supplement to care BUT it must not be used as a substitute for care.

As I midwife I have certainly seen many babies born with the cord around the neck who are born alive and well, apparently completely unaffected. I have also seen plenty of comments from women on facebook and other social media who are prepared to say “my baby was born with the cord around his neck and he was fine” implying, by making that statement, that because their baby was fine that that must mean that it is never a problem! I have also seen the other side of the story. My daughter Emma was stillborn with the cord around her neck. Whilst I have never thought that this was the only reason for her death I think it probably contributed, as I will explain below. I have also served as a midwife on South Australia Perinatal sub committee. This committee looks at all stillbirths in South Australia and classifies the cause of death. Whilst serving on this committee I had the privilege of learning from the wonderful Dr Yee Khong (South Australia’s awesome perinatal pathologist) about signs that he sees in cords of stillborn babies that indicate to him that the cord played a part in the stillbirth. That said I also know from my service on this committee that cord round the neck is quite rarely attributed as the cause of death, even if it has played a big part; it is usually considered a contributory factor. This means that when people read perinatal statistics they don’t see “cord around the neck” as a cause of death and this can lead to the false assumption that cord round the neck never causes stillbirth. So I think the short answer to “is the cord around the neck a problem or not?” is “it depends”. Depends on what? Probably lots of things but here are the top 3…IMHO:·The type of wrap·The vulnerability of the unborn baby·Other factors such as the position of the placenta, the length of the cord, the amount of whartons jelly and the “cord design” AND the position of the baby in the uterus.Type of wrap:Jason Collins has done a lot of work in this area and he describes two types of nuchal cord illustrated in the picture below:

Type A circles the neck but is able to slide, Type B locks on itself and can tighten. Times when it is especially likely that the tightening can occur are when the baby naturally drops into the pelvis ready for birth at around 36 weeks and also when the baby moves down into the pelvis during birth.

So if the baby has a type B cord then clearly this has the potential to be MUCH more problematic than a type A. Why? Well the type A is likely to slip past the body as the unborn baby moves around and/or descends during birth whereas the type B will tighten and may cause such distress that a c-section is warranted and can also cause the baby’s lifeline to become squeezed and blocked such that it can result in the unborn baby’s death. Can the person delivering the baby tell if the baby was a type one or type two cord? No BUT it can be clearly seen on ultrasound…if you are looking! Vulnerability: The baby who dies to stillbirth often has a combination of factors which together result in stillbirth. The tricky thing is that whilst we know some factors that make the baby vulnerable to stillbirth such as the baby who fails to grow, or the baby who fails to move as normal, there are many factors that we don’t know about yet that also make the unborn baby vulnerable. Looking at the circles we can see that if the baby is vulnerable AND he has a type 2 cord around his neck AND he has a posterior located placenta AND a long skinny cord AND mother who regularly sleeps on her back that all these factors combined may just be the straw for THAT baby. My “triple risk model” helps give a visual for this:

Other factors:

There are many other factors that can come into play regarding whether or not the cord around the neck MIGHT be a problem for SOME babies. These include: the position of the placenta, the length of the cord, the amount of wharton’s jelly and the “cord design” as well as the position of the baby. Briefly if the cord is thick, normal length, nicely spiralled (without being excessively so), has three vessels and lots of wharton’s jelly then THAT baby is much more likely to be born alive and well even IF the cord is around the neck than if the cord is long, skinny, straight and with minimal wharton’s. For more about this have a look at Dr Collin’s book “silent risk”

Summary:

So should a pregnant mother worry if it is seen on ultrasound that her unborn baby has the cord around its neck? No she shouldn’t worry BUT she should be aware that there may be other factors at play (such as I have listed above) that mean that this could end up being a problem for her unborn baby. So IF she knows that her baby has the cord around its neck (an oftentimes she doesn’t) then that’s the mother who should pay particularly attention to what other factors she can remove from the circles of the triple risk model to help keep her baby safe.

I frequently find myself competing for the research dollar against the heavy prioritization of Cancer, diabetes, and heart disease in the research agenda. This seems to be the case not only in Australia but worldwide. I think stillbirth research gets a back seat because policy makers don’t seem to realise the enormous economic cost to families who suffer stillbirth. But two literature reviews might start to go some way to giving stillbirth researchers needed ammunition to convince those that hold the purse strings of the huge cost of stillbirth. Once recently published literature review goes into great detail about the intangible costs of stillbirth including the costs of :

Profound grief

Depression

Social Isolation

Couples relationship

Sibling issues

Return to normality

Need for support

Recovery

Each of these dot points represent untold money in terms of heartache, grief, loss, despair, divorce, anxiety, medication and suicide with accompanying resources in time, effort and money by both the sufferers and those who help them. It also needs to be understood that one baby usually has two parents and four grandparents as well as any number of siblings, aunties, uncles, cousins and the list goes on…and on. Meaning that one baby’s death can easily impact on 50 other people, many of these people also incur ongoing intangible costs associated with the stillbirth.This recent report about intangible costs compliments an earlier report which focussed on the direct economic costs of stillbirth including, health service use, lost productivity from time off work and costs incurred in a subsequent pregnancy. So together these two papers tell a tale of mighty economic costs of stillbirth that are both measurable and immeasurable, but nevertheless profound.One can only hope that sometime in the not too distant future stillbirth research will more easily receive the funding it deserves and stillbirth researchers can all get on with finding ways of ridding the earth of this scourge.

One of the most frequent objections I get when I talk to maternity care providers about talking to pregnant women about stillbirth during pregnancy is that they don’t want to do it because “you will make them anxious” I noted with concern today that there were several newspaper reports from the UK indicating that maternity hospitals in the UK had been inundated with calls from concerned mums following the episode about stillbirth on “eastenders’ . In the wake of this I bet that here will be obstetricians and midwives prepared to say to me ”I told you so ” They may be surprised to learn that I would whole heartedly agree that talking to woman about stillbirth without also talking to them about how to reduce the risk is most likely to be anxiety provoking BUT …and it’s a big BUT :) what needs to happen is not to say “I wont tell them about stillbirth at all” but rather to say “if I am going to talk about stillbirth then I also need to talk to the pregnant mum about ways she can keep her baby safe. If you just raise awareness of stillbirth without also talking about ways to reduce risk, of course you are going to provoke anxiety. The thought of losing your baby is absolutely terrifying and when it is portrayed on television to characters we have grown to love of course it is scary. So what needs to happen when these kinds of stories are planned is to tell the whole story, by all means raise awareness but do this ALONGSIDE information about how to reduce the risk, because only when the two things are done together will stillbirth be truly brought out of the shadows.